Most rare disease patients who stop meds do so deliberately: Report
Project set out to find cause of treatment nonadherence among patients
People with a rare disease who do not adhere to their therapeutic regimen primarily do so intentionally, rather than due to forgetfulness, based on how they view their disease and treatment.
That’s according to a recent report from Atlantis Health, a global group of companies that specializes in developing behavior change solutions for healthcare and life sciences organizations.
The aim of the project was to find the underlying cause of treatment nonadherence among people with rare diseases, such as Lambert-Eaton myasthenic syndrome, so that the problem can be addressed, possibly through improved healthcare consultations and better-informed design of patient support programs.
“Rare diseases are serious, often chronic and progressive diseases that often have a significant impact on mortality and [quality of life],” Jonny Duder, Atlantis Health CEO, said in a press release. “New rare disease treatments are making a significant impact on these outcomes [but this] relies on patients and their families accepting and adhering to treatments long term.”
Treatment nonadherence becoming major global health issue
The project used the Intentional Non-Adherence Scale, a validated tool that specifically explores the issue of treatment nonadherence, a major emerging global health issue that is not limited to any particular disorder or treatment.
The assessment contains 13 questions that look into reasons for noncompliance that may relate to “resisting illness” or “testing treatment.”
The questions were answered by 72 people living with a rare disease in the U.S., the U.K., Germany, Australia, and New Zealand. Respondents represented a broad range of rare disorders, including both genetic and non-genetic conditions, autoimmune diseases, and cancers. More than half of the participants (68%) had been living with their rare disease for more than three years.
In addition, 53% of the respondents had been prescribed more than three medications, with two-thirds being on medications that are supplied in tablet or capsule form. Nearly three-quarters of the patients reported taking medications at least once daily.
Among those with chronic or rare diseases who stop taking their medications, forgetfulness had long been thought by many as the main reason. The study, however, points to another reason: patients making a conscious decision to resist their illness.
“This suggests that respondents face challenges in accepting their disease and adapting to life, rather than wanting to test their treatments,” the report stated.
In the top reasons for nonadherence, 55% of the respondents cited a desire to lead a normal life again, 51% said their medication was “inconvenient to take all the time,” and 49% said they wished to think of themselves as healthy again. Such findings indicate that patients are psychologically resisting their illness, causing them to intentionally sabotage their own treatment, according to Atlantis Health.
“I just want to be healthy again, and not live with any of these restrictions or medicines,” said one of the patients who is living with a rare form of kidney disease in the U.S.
Patient nonadherence to treatment increases over time
The study also found that such nonadherence heightens over time, and that those living with a rare disease for six to 12 months are the most likely to cease complying with their prescribed treatment plan and to see how they feel without their medication.
Among those with a rare disease, who make up 5% of the global population, nonadherence rates are between 58% and 65%, which are among the highest of any diseases.
“It’s therefore critical that we get these rare disease nonadherence findings out — especially to rare disease medication and care providers worldwide — because together we can design and deliver solutions that help people living with rare diseases accept their disease and treatment plan to ensure patients receive the full benefit of treatment to improve long term outcomes,” Duder said.
To help boost treatment adherence among patients, Atlantis Health calls for increased and continuing education and support, particularly if a patient’s frustration and fatigue has set in. Risk factors for nonadherence can also be identified and mitigated through both in-person and remote assessments.
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